“for I am with you”

by Courtney Kruse | Jul 27, 2014 | Blog Posts

During the NICU days I spent time meditating on and memorizing this verse:

fear not, for I am with you; be not dismayed, for I am your God; I will strengthen you, I will help you, I will uphold you with my righteous right hand. Isaiah 41:10

There has been much reason to fear these days, and much of my day is spent imagining what it will be like if…

This is what’s been on my mind lately.

“Fear not… be not dismayed” is my part.  I must be obedient in pushing away those fears, but I do not have to do it alone!

“For I am with you… for I am your God”  God, who spoke the universe into being, who loves us and made us His own is with me as I change those diapers, and with me as I hold my screaming baby to the table as they stab holes in his arms, and with us as we hear hard news from the doctors.

“I will help you.”  He will help me when we hear words like “oncology,” and “chemo.”  He will help me when I have to teach my baby to put his fingers in his mouth, and encourage him to turn his head and other things babies are supposed to do on their own.  He will help me read a pile of books to a pile of boys, and take the crew to the park, and enter the boy’s sleepatorium for the seventh time and sing sweetly at bedtime when all I want to do is sit with my baby (as if that somehow will make him all better).

“I will uphold you with my righteous right hand.”  He holds me up in righteousness when I can’t do anything right.

So, why should I be dismayed?  Why should I fear?!  It’s a minute by minute decision.

waiting

by Courtney Kruse | Jul 25, 2014 | Blog Posts

Our first appointment on Weds was with a GI specialist.  He said the reason for the bleeding could be 3 things.  The easiest and most common thing is a dairy or soy intolerance.  So, I am cutting dairy and soy from my diet and we are calling back in a week if the bleeding doesn’t stop.  I am skeptical, as my diet has been just 1-2 servings/day.  I hope this is the  cause, because the other two problems are big problems.  He ordered an ultrasound of Noah’s abdomen and they saw his spleen is enlarged just a little bit, and everything else is normal (good news)!

The Hematologist/Oncologist saw him next and his bloodwork came back with his platelets and red blood cells staying about the same, which is fantastic considering he was bleeding!!   The percentage of blasts in his blood had over doubled in 1 week.  More tests next week, and if that blast percentage increases at the same rate, his doctor said we would discuss a bone marrow biopsy.

After talking with the doctor yesterday, and reading some studies on my own, I am understanding TMD more.  From my understanding, babies who still have TMD after 36 days of life and are premature have a higher chance of having leukemia that would need treatment- AML.  BUT he does not have other things working against him like an enlarged liver or super elevated white blood count.  So, even though I know more, we still wait.

Dave and I were joking that he is definitely my mother’s grandchild as he has chosen the most alarming and dramatic path to getting better:)

I was told this week by someone wise that they were praying for his temporary healing because forever healing doesn’t occur until we get to heaven.  Trusting and waiting on healer God.

Rock

by Courtney Kruse | Jul 21, 2014 | Blog Posts

The last week has been rough. There has been some small amounts of blood in Noah’s diaper. On Thursday the first diaper of the morning had a big blood clot, and then subsequent diapers had more blood. Called, had an appointment, and they did a bunch of bloodwork. The bloodwork for the last 2 weeks in a row looks worse. They aren’t going to do anything about the intestinal bleeding, except watch his blood work, and transfuse when necessary. We have instructions to go to the ER if the bleeding gets worse. It breaks my heart each diaper change, knowing his body isn’t able to keep up with production of blood and not knowing why he is bleeding. We have appointments with a GI specialist and Hematology Oncology this Weds, and they have said they want to watch Noah more closely with weekly appointments. Sigh.

I waited patiently for the Lord;
he inclined to me and heard my cry.
2 He drew me up from the pit of destruction,
out of the miry bog,
and set my feet upon a rock,
making my steps secure.
3 He put a new song in my mouth,
a song of praise to our God.
Many will see and fear,
and put their trust in the Lord.

My steps are secure. He inclined to hear my prayer. He puts a song in my mouth.

There are still lots of questions, and the waiting is hard. Keep praying!

Thankfully Noah mostly seems not to notice (except when they are stabbing him). He is happy, eating well, growing, cooing and holding his head up. Seeing other older kids at the clinic in Rochester — I am so thankful Noah is going through this as a baby!